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Hi, I’m waiting on an October appointment with a Geneticist to confirm EDS as I have hypermobility amongst lots of other symptoms. In the last 8 months, my eyesight has become problematic, with constant double & blurred vision I put down to meds. After it continued worsening, I visited my Optometrist who confirmed the beginning of a cataract & the reason for my distorted vision as I require a corneal transplant in about 3 years. He emphasises I had 20/20 vision when last tested 8 months ago. Since seeing him a fortnight ago, my vision has deteriorated further so I now can’t read anything or use my phone without reading glasses. I have made an appointment with my Opthamologist & the speed of my vision loss is completely frightening. Has this happened to others? When I place my finger on my closed eyelid I can feel a raised lump that is on the surface of my eye, not in my lid & have had this for at least 2yrs.
Hi, I’m waiting on an October appointment with a Geneticist to confirm EDS as I have hypermobility amongst lots of other symptoms. In the last 8 months, my eyesight has become problematic, with constant double & blurred vision I put down to meds. After it continued worsening, I visited my Optometrist who confirmed the beginning of a cataract & the reason for my distorted vision as I require a corneal transplant in about 3 years. He emphasises I had 20/20 vision when last tested 8 months ago. Since seeing him a fortnight ago, my vision has deteriorated further so I now can’t read anything or use my phone without reading glasses. I have made an appointment with my Opthamologist & the speed of my vision loss is completely frightening. Has this happened to others? When I place my finger on my closed eyelid I can feel a raised lump that is on the surface of my eye, not in my lid & have had this for at least 2yrs.
HI Lisaw, Did your doctor tell you if you had keratoconus (it sort of sounds like it, but I’m flying blind here). Does the double vision occur out of that one eye, or only if both eyes are open? If it is keratoconus, you may be a good candidate for corneal cross-linking. It’s in my book (see the book on the home page). Perhaps that will help you? Let us know, OK? 😉
Thank you so much Dr Diana. I feel better prepared for the visit to my Opthamologist & I only have blurred/double vision in the eye with the cataract & corneal transplant requirement. Will read your book over the weekend & glad to hear there are other options other than the graft.
The Optometrist did not mention keratoconus & did not know anything about EDS so I was very glad I’d taken your handout. I will update this post when I get more info from my Opthamologist
The Optometrist did not mention keratoconus & did not know anything about EDS so I was very glad I’d taken your handout. I will update this post when I get more info from my Opthamologist
Lots of education is needed out there, my friend! So glad the book and handout is helpful. 😉
Hi Dr Diana,
I visited the Opthamologist and it’s taken me until now to be able to post about the experience. A week before the appointment I’d been put on very heavy anti-seizure medication for migraines by my Neurologist which had affected my brain function and speech and balance, so I’d mentioned this to the Opthamologist’s assistant but still felt able to handle the appointment, I was just a little bit slower than usual. The Assistant then stepped me through a detailed interview about the problem with my left eye and I confirmed I had the beginning of a cataract and required a corneal transplant and that I only had blurred and double vision in that left eye. The assistant took copious notes and gave all of these to the Opthamologist who then asked me to come through. He spent quite some time reviewing all the notes and reciting information about Ehlers-Danlos Syndrome & migraines which I found quite confusing with my medication and I mentioned that I was on heavy anti seizure medication and was experiencing difficulty with brain function. He then asked if it was only my left eye affected by the double and blurred vision and I didn’t answer as I knew the assistant had written down that this was the case. I then got side tracked and answered a different question and the short story was he got very angry with me for not listening to him and I started crying as he would not repeat the question so I could properly answer it and he had to do all the eye tests on me while I continued crying. He then said after 30 minutes of testing that I needed to travel an hour into another city for him to use machines that would measure OCT-M and keratometry. On the up side, I’m glad I made him terribly uncomfortable for the whole appointment as he seems to have a form of aspergers and an inability to gauge social queues (he looks after my Father and me but only recalled knowing me when I was leaving). I hobbled out to reception on my walking stick with my sunglasses on with the receptionist trying to rebook my appointment thinking I’d never go near him again.
I would now like to know the best way of finding another opthamologist. I have a recommendation for an Opthamalgic surgeon or otherwise do I aim for someone in Sydney that does the cross linking as I would bet that I need that, given my EDS Hypermobility diagnosis and my further deteriorating eye sight even since I last posted.
Sorry about any spelling mistakes and many thanks for your help to date.
Cheers,
LisaLisa, I’m so sorry to hear about your horrible experience! I can’t believe he was so heartless as to try to just continue the exam as usual, despite saying that you were crying. It just breaks my heart. Yes, Dr. shopping may be a good idea for you. Do you have a copy of my book about EDS and the eyes? It’s inexpensive, and I can send you a worksheet for your doctor that may also help. I found the best way to find doctors is to ask my friends. I’d highly recommend taking a friend with you at your next appointment. You need an advocate – someone who will give the doctor a piece of your mind if mistreatment like that occurs again. 🙂 Cross linking is likely a good thing for you to consider, if it is available where you live. Here in the states, it is only available in clinical trials. Please let us know how it goes, and don’t let mean, nasty, indifferent folks like him get under your skin. Big hug…
Hi Dr Diana, Before my appointment I had already bought your book and had read about the cross linking, so I was seeing this Opthamologist to get to an eye surgeon for the operation. My next approach will be to contact Melbourne University where they have been holding all the clinical trials in Australia. By the way, is the worksheet that you mentioned for my Doctor in the book?
Thanks for your guidance. It was a one off to be at an appointment on my own and then for everything to go so wrong. I just wish instead of crying that I could have got really angry and given him a piece of my mind and then most importantly walked out, as he spent 30 minutes examining my eyes to then tell me I needed to drive an hour to his other offices to be put under other machines! Oh well. it’s done now and I learnt a lot from the experience. He could have been the first person I got to hit with my walking cane.
Cheers and thanks,
Lisa
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